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New And Really Really Need Help


samantha303

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samantha303 Newbie

Hello everyone,

 

 

I have been suffering diffuse hair loss for 8 months and have low ferritin level (22) and low vitamin D level (34).

I have severe symptoms of anemia from Octorber 2013 to Feburary 2014. Since taking iron tablets for 7 weeks my symptoms have subsided but I am still losing hair.

 

I have IBS and now symptoms have worsened. I have trapped wind, hicupps, stomach and abnominal cramps for a whole day after lunch and dinner. Sometimes I still feel dizzy after being on tablets for almost 2 months. I thought the palpitation went away after supplements but now it seems to come back again.

 

I am going to see my doctor next week but I am not sure what i should test for. I know some doctors can be irresponsible so I really really want everyone's advice.

 

 

Thank you!!


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cyclinglady Grand Master

Welcome! Here is a link to the University of Chicago's website for celiac disease. It contains a list of symptoms and and the testing requirements that you can share with your doctor.

Open Original Shared Link

I was severely anemic and that happened to be my only symptom. Iron tablets helped, but I could never get ahead......

Hair loss, could be nutritional or you could have thyroid issues. Get that checked out too!

Take care and do not give up!

samantha303 Newbie

Welcome! Here is a link to the University of Chicago's website for celiac disease. It contains a list of symptoms and and the testing requirements that you can share with your doctor.

Open Original Shared Link

I was severely anemic and that happened to be my only symptom. Iron tablets helped, but I could never get ahead......

Hair loss, could be nutritional or you could have thyroid issues. Get that checked out too!

Take care and do not give up!

 

 

Thank you so much for your reply. I have tested for my thyroid and it came back normal. 

 

I just had milk and cereal for breakfast and during lunch time (i had veggies and beef) I started to fart nonstop!!!!! And my stomach is hurting too :( :(

cyclinglady Grand Master

Keep eating gluten until all testing is complete (lactose intolerance often goes hand-in-hand with celiac disease due to intestinal damage) so that might have to go until you are healed.

Sorry you are feeling unwell.

samantha303 Newbie

Keep eating gluten until all testing is complete (lactose intolerance often goes hand-in-hand with celiac disease due to intestinal damage) so that might have to go until you are healed.

Sorry you are feeling unwell.

 

 

Could you please tell me what test I should do? I'd really really appreciate it as I am in exam period and dont have much time to do research. My doc appointment is next Monday.

Thank you so much!!

samantha303 Newbie

(Just in case my doc will miss out anything important.)

cyclinglady Grand Master

Click here for List of tests....

Open Original Shared Link


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cyclinglady Grand Master

Good luck on your exams! Print off the testing requirements and show them to your doctor. Any GP/PCP, even your GYN can Oder the tests. You do not have to go to a GI for the blood tests.

samantha303 Newbie

Good luck on your exams! Print off the testing requirements and show them to your doctor. Any GP/PCP, even your GYN can Oder the tests. You do not have to go to a GI for the blood tests.

 

Thank you!

 

I am quite sure I have lactose intolerance now as I always bloat, feel nauseous, burp and fart after milk.

I didn't drink milk at all before I was 19 (and before i went abroad). Most milk produced in my country tastes 'raw' and I threw up almost right after milk. After I came to England, the taste of milk is totally acceptable so I started to drink a lot. Now I realised I started to develop 'trapped wind after meal' symdrone slowly.

 

I will have my blood test result back on Friday. I wonder whether I can stop drinking milk from now on as i feel nauseous this morning after milk and cereal. But I do worry that my result will come back negative.

samantha303 Newbie

My doctor said i have to be referred to a GI for further tests. She can only do blood test for gluten intolerance for me.

What other tests will GI do for me? I really don't want to do a endoscopy or colonoscopy :(

If I see a nutritionist now after I get my blood test result, will it affect anything if I still want to see a GI in the future?

It takes a long time to get an appointment with a GI here.

 

Thank you!

nvsmom Community Regular

It seems a GI usually does the blood tests again (tTG IgA and IgG, DGP IgA and IgG, EMA IgA) and the endoscopic biopsy... That's really all they can do at this point.  Some will run the genetic tests but that only tells you if you are in the minority of the population (about 30%) who have the genetics that make them more likely to get celiac disease than the other 70% of the world; just remember that only about 3% of those with the "celiac genetics" end up with the disease - it's not that helpful of a test in my opinion.

 

You must be eating gluten for close to three months for accurate blood tests, so you may not want to go gluten-free before seeing the GI as some people find it very difficult to resume eating gluten after being gluten-free for a time.

 

BTW, it takes forever to get in to a GI here too - 9-12 months for suspected celiac disease.  That was too long for me so I skipped it entirely.

 

Best wishes. :)

cyclinglady Grand Master

Humm....every insurance company and healthcare system is different.  Sorry, that you have to wait, but it sounds like you are getting the celiac blood panel now, instead of waiting for the GI.    Keep eating gluten until testing is complete like Nicole says, but you can stop drinking and consuming milk products.  That should bring you some relief and it will not affect the celiac testing.  

 

 

If you do test positive and you need or decide to wait for an endoscopy (or even a colonoscopy), it's not bad.  Ask to be completely sedated!   Feeling great is worth it!  

samantha303 Newbie

It seems a GI usually does the blood tests again (tTG IgA and IgG, DGP IgA and IgG, EMA IgA) and the endoscopic biopsy... That's really all they can do at this point.  Some will run the genetic tests but that only tells you if you are in the minority of the population (about 30%) who have the genetics that make them more likely to get celiac disease than the other 70% of the world; just remember that only about 3% of those with the "celiac genetics" end up with the disease - it's not that helpful of a test in my opinion.

 

You must be eating gluten for close to three months for accurate blood tests, so you may not want to go gluten-free before seeing the GI as some people find it very difficult to resume eating gluten after being gluten-free for a time.

 

BTW, it takes forever to get in to a GI here too - 9-12 months for suspected celiac disease.  That was too long for me so I skipped it entirely.

 

Best wishes. :)

 

 

Thanks for the reply.

 

Got a phone call from my doctor. She said my blood test came back negative and she doesnt seem keen to pursue any further tests.

She thinks lots of Asian (I am an Asian woman) have IBS so it's not a big deal :(

I am going back to China soon where I can see any doctor and do any tests on the same day for low price. I will not go back until July though.

I havn't had bread or rice on a daily basis for 2 months now (probably have them a few times a week instead), as I need to boost my ferritin and vitamin D without getting fat :P but I still have cereal with milk for breakfast everyday.

 

Is it possible to have lactose intolerance alone wihtout being allergic to gluten?

 

 

Thank you! :)

kareng Grand Master

Thanks for the reply.

Got a phone call from my doctor. She said my blood test came back negative and she doesnt seem keen to pursue any further tests.

She thinks lots of Asian (I am an Asian woman) have IBS so it's not a big deal :(

I am going back to China soon where I can see any doctor and do any tests on the same day for low price. I will not go back until July though.

I havn't had bread or rice on a daily basis for 2 months now (probably have them a few times a week instead), as I need to boost my ferritin and vitamin D without getting fat :P but I still have cereal with milk for breakfast everyday.

Is it possible to have lactose intolerance alone wihtout being allergic to gluten?

Thank you! :)

I think lactose intolerance is very common in Asian adults. Many people in the world have lactose intolerance and don't have Celiac. Also, rice does not contain gluten. And Celiac isn't an allergy.

Open Original Shared Link

samantha303 Newbie

BTW, I cook

 

Humm....every insurance company and healthcare system is different.  Sorry, that you have to wait, but it sounds like you are getting the celiac blood panel now, instead of waiting for the GI.    Keep eating gluten until testing is complete like Nicole says, but you can stop drinking and consuming milk products.  That should bring you some relief and it will not affect the celiac testing.  

 

 

If you do test positive and you need or decide to wait for an endoscopy (or even a colonoscopy), it's not bad.  Ask to be completely sedated!   Feeling great is worth it!  

 

 

 

I don't think I have the guts to do any biopsies tbh, lol.

In that case, I am going to try lactose free milk tomorrow.

I am not sure I react badly after eating gluten though. I had pizza last night and rice for lunch today. Didn't really feel bad at all. I felt nauseous after drinking milk this morning on the other hand.

samantha303 Newbie

My mum said I stopped drinking milk (any kind) before I turned 1 year old. She is also allergic to milk but she has no clue what lactose intolerance is. :unsure:

cyclinglady Grand Master

Yes!  Rice is fine to eat!   

 

You can pursue celiac testing when you get back home, but In the meantime, give up all  milk products!!!!  Try almond, soy or coconut milk as a substitute.  I'd also recommend eating more traditional Chinese foods for breakfast too!  You might solve your problems!  

kareng Grand Master

BTW, I cook

 

 

 

 

I don't think I have the guts to do any biopsies tbh, lol.

In that case, I am going to try lactose free milk tomorrow.

I am not sure I react badly after eating gluten though. I had pizza last night and rice for lunch today. Didn't really feel bad at all. I felt nauseous after drinking milk this morning on the other hand.

  

My mum said I stopped drinking milk (any kind) before I turned 1 year old. She is also allergic to milk but she has no clue what lactose intolerance is. :unsure:

Once again - rice is gluten free. It is possible rice bothers you for other reasons, but it isn't gluten.

You said you were drinking milk, so I didn't realize you hadn't had any since you were 1. Are you eating any other dairy that could be causing a lactose intolerance issue?

samantha303 Newbie

I think lactose intolerance is very common in Asian adults. Many people in the world have lactose intolerance and don't have Celiac. Also, rice does not contain gluten. And Celiac isn't an allergy.

Open Original Shared Link

 

 

Interesting.

I do cook everything with a non gluten free soy sauce though.

I am going to go lactose free for a few weeks to see how I feel.

How much damage has been done to my body if I do have lactose intolerance? I have been drinking milk on a daily basis for almost 3 years now. Never really thought about lactose intolerance :blink:

 

Thank you! :) :)

kareng Grand Master

Read more on the link I gave you to learn about it.

samantha303 Newbie

  

Once again - rice is gluten free. It is possible rice bothers you for other reasons, but it isn't gluten.

You said you were drinking milk, so I didn't realize you hadn't had any since you were 1. Are you eating any other dairy that could be causing a lactose intolerance issue?

 

 

Sorry for causing any confusion.

I avoided milk like a plague from when i was one till 18 years old.

I liked the taste of milk in England so started to drink milk on a daily basis since I was 19. I slowly developed symptoms but didn't think much of it.

Is egg dairy product? I am fine with eggs i suppose.

I don't eat cheese very often as I feel sick just by smelling it lol

kareng Grand Master

Sorry for causing any confusion.

I avoided milk like a plague from when i was one till 18 years old.

I liked the taste of milk in England so started to drink milk on a daily basis since I was 19. I slowly developed symptoms but didn't think much of it.

Is egg dairy product? I am fine with eggs i suppose.

I don't eat cheese very often as I feel sick just by smelling it lol

Dairy comes from a cow, usually. I guess you could be drinking goats milk, but that is unusual.

So, no, eggs are not dairy. Eggs come from birds.   :D

nvsmom Community Regular

You might want to try the milk substitutes made from almonds or coconut. Things like coconut cream in coffee or tea made it easy for me to skip milk.  There are even cheese, yogurt, sour Eggs anre not considered dairycream, ice cream,and butter (all made from dairy) substitutes that are very good.

 

Eggs are not considered dairy.

cyclinglady Grand Master

Seriously, everyone on this forum (mothers!) has given you lots of good tips because we know you are not feeling well, but let's face it, you are a student.  Students are supposed to be constantly learning, researching, testing and challenging theories.  Once your exams are completed, I suggest you start becoming educated in your health because only YOU can be your best advocate.  It's a simple fact of life like Moms (even yours) can not be with you always!

 

I wish you the best!  

 

Hugs! 

samantha303 Newbie

Thanks a lot to everyone! There's so much I need to learn :)

 

 

Found a post about Chinese and lactose intolerance, very interesting. 

Open Original Shared Link

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